Children with language disorders get a raw deal (again)

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You’ve probably heard that the DSM – the manual that guides clinical and research diagnosis – is changing.  And if you know that, it is probably in the context of some major changes in DSM-V to the diagnostic criteria for autism spectrum disorder (ASD) and the introduction of Social Communication Disorder. I’m not going to talk about the changes to ASD here as there has been extensive coverage in the media, on blogs and in prestigious academic publications.

What you probably haven’t heard anything about at all is the proposed changes to Communication Disorders. I personally have seen no discussion of it and yet the proposals are fairly radical. There has been an abolition of the distinction between expressive and receptive language disorder. Originally, there was a proposal to distinguish ‘specific’ language impairment from general language impairments, and to introduce ‘late language emergence’ as a new diagnosis. As I was gearing up to blog about this, everything changed. There are now three disorders proposed: Language disorder (LD), Speech disorder (SD), and Social Communication Disorder (SCD). There are no core criteria for LD, just a list of symptoms that includes spelling, reading decoding and comprehension, vocabulary, grammar, narrative, expository and conversational discourse and other pragmatic language abilities ‘individually or in any combination’. As yet there is no published rationale for this change. Similarly, SD includes articulation, dysfluency (stammering), voice disorders, and cleft lip and palate. As yet there is no published rationale for this change either. SCD seems to be the only one that includes exclusionary criteria – it is defined as problems with narrative, expository and conversational discourse not accounted for by deficits in vocabulary, grammar, non-verbal intelligence or a restricted repertoire of interests and behaviour (I tried to find such individuals for my PhD– it didn’t work). Although there is a published rationale for the introduction of this disorder, as far as I am aware there is no gold standard assessment with which to diagnose it.

I started wondering who was responsible for making these decisions on behalf of me, my profession and the children I work with most frequently. Luckily it is easy to find out. There are 13 people on the DSM-5 working party for neurodevelopmental disorders and their remit includes the most common disorders of childhood: Communication Disorders, ADHD, Specific Learning Disorders (including dyslexia and poor reading comprehension), Motor Disorders, Intellectual Disabilities and of course, ASD. One might reasonably expect that the 13 people on the working party would have a range of expertise that covers these disorders and the co-morbidities amongst them. When I looked at the list of names I recognised most instantly as eminent scholars and clinicians responsible for a large body of research that I greatly admire. But all of it focuses on autism spectrum disorder! Every member of the working party declare some expertise in ASD; seven of them work exclusively on ASD. There is only one speech-language pathologist on the working party – a real shock given that all of the disorders they cover are associated with speech and language difficulties. Yet I can’t help but think that her contribution is somewhat diminished by the fact that she too works exclusively with young children with ASD. In fact, the only person in the working group that has ever published anything on children with language disorders who do NOT have ASD is Gillian Baird, OBE. I’m super proud of the fact that she is one of our SCALES team, but as a consultant paediatrician, I’m sure her expertise is used more broadly within the group.

I shouldn’t be surprised – in 2010 Dorothy Bishop published an article demonstrating that in relation to prevalence and severity estimates, language disorders are woefully lagging behind in research publications and research funding (especially compared to ASD, which punches well above its weight on both counts). There are numerous reasons for this no doubt, but two things come to mind. First, the profession that serves children with language disorders, speech-language therapy, is dominated by women and has historically been less valued (I think) than other professions such as psychiatry and psychology. The second reason is that the nature of the disorder means that very often parents and families are not always in a position to advocate for a better deal (though organisations like Afasic certainly help). I’d like to change both of those things.

So DSM-V: if you need some fabulous SLTs with research and clinical expertise to help you out, here are some recommendations for you. First and foremost, Professor Rhea Paul – she’s probably had direct experience of working with almost all of the populations you cover and literally wrote the book on Language Disorders (from Infancy to Adolescence). She was also on the DSM-IV working party so her absence here is baffling. Or how about Bruce Tomblin? He is responsible for the largest and most influential population study of language disorder to date (watch this space Bruce!) and knows a thing or two about how non-verbal abilities relate to language disorder over time (amongst many other things). The Speech Disorders are many and varied and require highly specialist knowledge for diagnosis and treatment, which I don’t have, but should be considered. I am amused by all of the press surrounding SCD – you’d think no one had ever thought of it before! Yet there is a substantial literature provided by Martin Fujiki and Bonnie Brinton, Joanne Volden and the UK’s own Catherine Adams, who as far as I’m aware is the only person to have conducted a randomised controlled trial of social communication intervention. I realise this is a very short and Anglo-American specific list, but it is at least a start. And hopefully our European SLTs will be working on the revisions to ICD-10!

The second thing I want to do is increase public awareness of language disorders. If people and policy makers were more aware of language disorders and the impact they can have on social acceptance, well-being, academic attainment and future employment capacity, perhaps we would see more balanced research investment and provision for all children with developmental concerns. To this end, I’m delighted to be a founding member of RALLI (Raising Awareness of Language Learning Impairments), along with Dorothy Bishop, Gina Conti-Ramsden (another SLT!), Maggie Snowling and practicing SLT, Becky Clark. We hooked up with Team Spirit to produce a range of videos that include children and young people, clinicians and researchers living with and working with language disorders. In the first week of release we’ve had over 4000 views from all over the world!

So while I’m not too optimistic about DSM-V, I am optimistic that these initiatives, in addition to the SCALES project, will bring a better deal for children with Language Disorders. Watch the videos here, then spread the word!

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The week in numbers

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Last week a series of events brought home to me the enormity of the SCALES project. Luckily, I’ve had some help to get through it all. Here are a few examples, in numbers:

10,000: the number of parent information leaflets delivered in 25 boxes. The RHUL Communications team has done a fantastic job and they look great, but Debbie and I realise it is going to take rather a long time to divide 10,000 leaflets into school packets.

144: the number of schools currently enrolled in the project, just over 50% of all schools with reception classes in Surrey (and more than 6,000 children). We are aiming for 80% so have a way to go, but this week we are concentrating on getting the packets together. That means 144+ envelopes, labels, invoices, return envelopes, and screening instructions. We persuade some undergraduate and PhD students to come and help us in exchange for chocolate and wine. With these supplies and cheesy music in the background, we have a very pleasant Friday afternoon counting leaflets and stuffing envelopes. One small room of the lab has now been taken over by school packs ready for posting and the remaining boxes of leaflets.

219: the number of applications we had for our 12 month graduate research assistant post. Once again, I seriously underestimated the scale of SCALES! We want to interview this week and needed to give a week’s notice to the candidates. I had expected about 70 applications and Debbie and I had blocked out Thursday morning to read through them and come up with a shortlist. What actually happened was that after a few minutes of shock and horror passed as seven batches of applications arrived, we both spent all day reading applications, stopping only for lunch and tea. We missed running club. I got home at 7.30 and started applications again after I put the baby to bed at 8. I finally stopped at midnight after falling asleep in front of the computer for the second time. I was up at 5.30 because we had a staff meeting all morning on Friday and I had to have my shortlist ready before that meeting started. Debbie too put in a massive effort and by 3pm we had it whittled down to seven. Sadly, not many applicants had read Dorothy Bishop’s useful guide to applying for RA positions making it an extremely challenging task indeed! Instead of elation I think we felt a bit deflated – we are hopeful the right person is in the final seven, but we also know that many bright and talented young people will be disappointed.

8: the number of undergraduate research projects I’ve got left to mark

6: the number of consecutive screens Debbie entered before she found the bug in the programme! The teacher screen is web-based; teachers will be able to log on remotely and fill in a short on-line questionnaire for each child in the class. This has been in development for some time now and we’ve done lots of practicing and proof-reading, getting nice teacher friends to give us feedback, filling out 2 or 3 at a time to make sure transitions between questionnaires worked and to find out exactly how the data were saved. It all seemed to be fine, but then genius Debbie decided to plough through 30, as if she were a participating teacher. I would not have had the patience to do this, but thank goodness she did – after six questionnaires it stopped saving the data in columns and put it all in endless rows! IT have now sorted the problem, but it did increase our anxieties about screening 10,000 children. Our next mission is to get a large number of people to log on at once to ensure the system doesn’t crash…

3: the number of reviewer comments I’ve got to address. Obviously the paper is not about SCALES, but some of the comments are relevant. The sticking point seems to be the fact that, try as we might, the group of children we’ve included with language impairments have lower non-verbal ability scores than their typically developing peers. There are at least two reasons why I think this is the case. One is that it seems unlikely that language will be selectively impaired in the developing brain. In essence this is what we are trying to test in SCALES –children will be selected for concerns about language and communication and then we will assess other aspects of development systematically to see what (if any) other deficits go hand-in-hand with language problems. The other reason is that language is a fantastic problem solving tool. You can hear typical kids use their language to figure out ‘non-verbal’ tasks (i.e. ‘it can’t be that piece, the lines are too thick.’ ‘oh, I need the piece with red on this side’). Children with language impairments are less likely to use language in this way because it is not always helpful to them. Over time then, children with language impairment will not do as well as their peers on non-verbal tasks.

Still, the notion of ‘specific’ language impairment persists and the reviewer wants us to either exclude children with lower non-verbal reasoning scores or ‘control’ for non-verbal ability. This makes no sense: excluding children will result in an unusual group that is less representative of the population as a whole.  And because non-verbal and verbal ability are so intimately linked, ‘controlling’ for non-verbal ability will have the effect of controlling for the variable we are most interested in. This is what I’ve said to the reviewers – hopefully they will listen this time! I am more hopeful that SCALES will provide much needed evidence about the impact of language impairment on non-verbal cognitive development and vice versa.

2: the number of PhD applications we made in connection with SCALES and the number of disappointments we’ve had about those PhD applications. One was not funded, one was funded (ranked 3rd in the Doctoral Training Centre) but the candidate has decided to go elsewhere. Both decisions are bewildering to me. The latter is particularly annoying as the studentships are not transferable, so we lose the money and the project. A quick straw poll suggests that I am not alone – people much more senior and amazing than me have been let down. But the small comfort I get from this is quickly replaced by frustration at the amount of time and energy that goes into supporting these applications. Of course there is so much uncertainty and competition in funding that great candidates will have to apply to multiply places. But few things are more painful to an academic than having to give money back (and this is the second time this has happened to me in the last year). Not to mention the time taken to work on the proposals and the number of potential students I turned away to support this one. There must be a better way – why not link studentships to grants? This would guarantee a motivated supervisor and that the student could work as part of a larger team. Or the CASE model, in which the project is funded and the supervisor advertises the studentship and awards to the most suitable candidate. As it is, I am loathe to put another application into the DTC. So I mope about for a few days and then start thinking about how to fund the projects…

The final number has nothing to do with SCALES, but is relevant to my last post:

44: the number of new Fellows elected to the Royal Society last week. Of which 2 were women.

I wonder if they ever had to stuff 10,000 leaflets into 144 envelopes in one afternoon…

Women in Science

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More than 80 years ago Virginia Woolf published an extended essay entitled ‘A Room of One’s Own’ in which she asked ‘where are all the women in history of English literature?’ She concluded that for the most part they were too busy scrubbing floors and caring for children, husbands and others to have the opportunity to contribute. The solution? A room of one’s own and a £500 annual allowance – in other words, time, space and enough money to be free of domestic responsibility.

You may think women have come a long way since 1929, but sometimes I wonder. The last episode of Stephen Fry’s otherwise wonderful series Planet Word was all about the written word and there was not a woman in sight. No women interviewed about the role of literature in our society and no women featured as outstanding contributions to the canon of English literature. Not even Virginia Woolf. If we replace ‘in literature’ with ‘in Science’ the question ‘where are all the women?’ is perhaps even more acute. Only 5% of the Royal Society Fellowship is female and last year, only 12% of ERC senior research grants were awarded to women. Thankfully concerted efforts are being made to improve the situation, but we clearly have a long way to go.

So why am I telling you this and what does it have to do with SCALES? Well last week I was asked to take the lead on our Department’s submission for an Athena Swan award. The Athena Swan charter outlines good employment practices for promoting the careers of women in science. Departments can be recognised for identifying barriers to gender equality and rewarded for taking active steps to remove those barriers. Preparing the submission is no trivial task and so in one sense it is yet another thing for me to juggle in an already packed workload. But as a woman in science, with a young daughter, who would one day like to be a Professor, I am intrinsically interested in improving the situation for women. I do wonder though if my conclusions will differ drastically from Virginia Woolf’s.

Take for instance an interview with Steven Pinker published last year as he was promoting his latest book, The better angels of our nature (which I confess I haven’t read – I don’t have time to read anything that goes on for more than 800 pages). When asked how he managed to produce such a scholarly tome, he replied something along the lines of Well, I took a sabbatical from Harvard and went to my second home in Cape Cod where I wrote 24/7, stopping only to eat and get some exercise. In other words, Steven Pinker has time, money and few tedious domestic chores. Should anyone ask me about my more modest contribution to knowledge (the SCALES project) I shall respond, ‘Well, I wrote it up on Fridays in my tiny loft room at the top of the house, stopping only to collect my daughter from nursery, run to the shops, put the washing out and cook the evening meal.’

Why only Fridays? Believe me when I say I could work on the SCALES project full time and still be an extremely busy woman. But like most academics, research is only one component of my job. Academics usually have at least three roles: research, teaching and administration (things like preparing for Athena Swan). Our university also has a fourth role important for Professorial banding which has to do with external engagement and impact. I hope this covers what I think of as my own ‘other’ category, which is less frequently included in workload models. This includes stuff like ‘good citizenship’ (reviewing other people’s grants, journal editorship), ‘public engagement’ (science open day, this blog), and ‘impact’ (LiLac meetings, talks to schools and parent groups, liaising with policy makers). The time I spend on each of these four roles varies somewhat throughout the year – during term time my week can easily be filled with teaching and student related matters. But in general, I try to block two days a week for research and split the rest of the week across the other three roles. Two days a week to run the SCALES project (and the other research projects that are currently running) – that includes the recruitment, testing, supervision of research staff, analysis, writing and rewriting papers and preparing the next round of grants.

And herein lies the problem – no one can really do first class, high impact, internationally renowned research in two days a week. And because the other roles are usually time specific (a lecture at 11 on Thursday has to be ready by 11 on Thursday), academia runs on the assumption that highly motivated, passionate people will pick up research in their ‘spare’ time, i.e. at evenings and weekends. Most academics I know do this, but it becomes a little bit more challenging when there are young children at home. Sure, the flexibility of when you work is one of the attractions of academia, but frankly I haven’t got the mental or physical energy to start writing papers at 9.00pm after the girl is in bed and the house is in order. And there have been times when I have seriously considered throwing in the towel because I realise I can’t compete with other academics who can and do work 24/7.

So what is the solution? I might have a few more ideas when I finish the Athena Swan process, but a couple of thoughts spring to mind immediately. One is acknowledgement that good research takes time and money. Some funding bodies do this: the ERC pays a contribution to salary so that researchers can ‘buy out’ of teaching and administrative duties. But I’m not sure this will be great for women in the longer term. First, they are hard to get and far fewer women apply in the first place, hence the low percentage of awards to women. Second, I’m not entirely sure it is a good idea to remove our stellar female scientists from undergraduate teaching. If we do that, who will inspire the next generation of young women (or young men)?

So if we continue to ask academics to fulfil multiple roles, perhaps our reward systems could reflect this. The man who does all of his admin so badly that he stops being asked to contribute, who puts the minimal effort into teaching and locks himself away night and day to produce his 4* papers while his partner looks after home and kids does not impress me in the slightest, but this is the profile that continues to be rewarded by systems like the REF, with a heavy focus on publication and specifically publication in top tier journals. Why not look at everybody’s total publication output in relation to other duties? I know lots of women who are lacking 4* outputs, but who do consistently high quality research, win teaching awards, do exceptional outreach and public engagement activities and are great colleagues. To do all of this and continue to pursue ever more publications in ever higher impact journals requires an investment of time that is not open to all women.

 Which brings me to the most radical proposal, ironically inspired by a Tory minister describing the disasters that lie in wait should the fuel tanker strike go ahead. He warned, ‘teachers won’t be able to drive, schools will close and working mums will have to take a day off work to look after their children.’ Working mums? Why not working dads? Why can’t dads take a day off work to look after their children?

So in addition to fantastic women in science initiatives such as Athena Swan, I think we need some Men at Home initiatives. We could convene working groups, led largely by men, to identify the barriers at work that prevent them from achieving equality in the home. We could then identify ways to remove these barriers so that men could reach their full potential as husbands and fathers. Two weeks of paternity leave? Rubbish! Why not shared parental leave that both parents are required to take? Brownie points for staying in the office past 6pm? NO! Ensure that men leave work in time to collect the children from school at least three times a week. Catch up with work on a Saturday? Don’t do it – take the kids to the park, do the shopping, make your hard working partner breakfast in bed. Too many papers are published these days anyway and life is short, so switch the computer off and join the family.

Looking at my own situation, I do have a room of my own (though the scalextric is threatening to take over), I earn more than £500 per annum, though certainly not enough to employ a cook or a cleaner once the nursery fees go out. But I am very lucky to have a partner who does his fair share (probably more) of the housework and childcare (thanks Ray!). If that were the norm, and in fact the expectation, I bet in another 80 years time we won’t need to ask ‘where are all the women?’ They’ll be shining for all to see.

Bias in research

I got a bit of flak from my last blog for suggesting that some highly experimental studies involving a small number of adults with a particular cognitive profile may not be relevant to the everyday lives of all people with autism. I was accused on Twitter and other places of being ‘biased’. At first I was a bit offended by this, but then I relaxed. One of the first things you learn as a psychology student is that everyone is biased. We can’t help it. It just seems to be part and parcel of the human condition. The second thing you learn though is that biases can be unhelpful and at worst, dangerous. In science biases can be particularly damaging, particularly if they cause scientists to ignore, or worse, suppress evidence that contradicts their biases, or prevents them from collecting or reporting such evidence in the first place (witness for example Susan Greenfield’s spectacular fall from academic grace). Scientists can’t completely eradicate biases, we are after all only human. The best we can do is to try and identify what our biases are, and take steps to minimize the impact of these biases on our scientific endeavours.

Thinking about bias brought to mind one of my favourite journal articles of recent years. The first thing I love about this paper is its wonderfully provocative title – the authors had the audacity to label me and people like me as WEIRD – white, educated, industrialized, rich and democratic. They then go on to make the observation that most psychology research, and more importantly the conclusions and theories about human perception and cognition derived from this research, is based almost entirely on WEIRD people, namely American (and British) university undergraduates. I can see why. I am deeply envious of my colleagues who can run a study on 50 undergrads in a matter of weeks, while it usually takes me a couple of years of travelling all over the place to have enough data to produce a publication! Nevertheless, the authors of this paper ask a simple question ‘are the data derived from an elite, 1% of the world’s population really relevant for the remaining 99% of human experience?’ And they make a convincing case that it is not. Guess what? Not everybody thinks, feels or processes information like a college student. In fact, when considered in relation to a more representative population sample (those in America or Britain who never made it to University or those from different cultures who never even went to a ‘school’ never mind university) these WEIRD people score so far from the population average that they could be considered ‘outliers’ and in some experimental contexts their data would be excluded. Does this mean we should abandon all research with undergraduates? Of course not, many groundbreaking theories have been derived from this subset of the population. Looking at the bigger picture also does not in any way diminish the strengths, talents or processing advantages of American and British undergraduates. It just means that if we want to draw any conclusions about ‘human’ cognition, we have to cast a wider net.

This has some bearing on the SCALES project. Why would I be crazy enough to take on a project of this size, which is a major logistical and intellectual challenge and frequently keeps me awake at night? Simple: I am interested in how language impairments are associated with impairments in other aspects of development (or ‘co-morbidity’). The literature suggests very strong associations: children identified with almost any kind of developmental disorder (ADHD, dyslexia, autism, Down syndrome etc.) are very likely to also have additional language impairments. Likewise, children with language impairments meet criteria for at least one other disorder at higher than expected rates (e.g. while dyslexia affects approximately 5% of the general population, some studies report that as many as 50% of children with ‘specific’ language impairment also meet criteria for dyslexia). The problem is that, with a few notable exceptions, the majority of studies reporting these associations are based on clinically referred samples of individuals, and these samples are inherently biased. In fact, this is so well-recognised that it even has a name, Berkson’s bias. The bias is that children who are having multiple development challenges (delayed language, clumsy, problems with attention and behaviour) are more likely to be noticed by parents and teachers and then referred for extra help from therapy or education services. However, there may be lots of children in mainstream classrooms who have whopping deficits in marking verb tenses (i.e. ‘he walk to school’ instead of ‘he walks or walked to school’) but are getting on just fine. This would not only be theoretically interesting (is language ‘special’ in the developing brain?), but practically important. If the ‘deficit’ we see doesn’t interfere with learning, making friends, or the child’s self-esteem, should we spend limited resources ‘fixing’ it? The only way to find out the extent to which language impairments are associated with other developmental concerns is to reduce the effects of Berkson’s bias, and the only way to do that is to recruit a more representative, population sample. That is what the SCALES project is trying to do.

I certainly have a few ideas about what I think we will find. I would prefer to call these ideas hypotheses, based on the extant literature and my own observations of children with language impairments over many years and across many clinical and educational settings. No doubt these hypotheses also reflect some my biases. I guess the test comes when we look at the data. If, in four years time, we find that my hypotheses are completely unsupported will I hang my head in shame, or try to hide the fact that I was wrong in case people think I am ignorant? No – I’d certainly be intrigued but also I think quite excited. Being wrong is often what moves science forward, challenges the dominant view and inspires new ideas and theories. How WEIRD is that? Well, based on the scientists I have known, I think not very. They may represent a biased sample, but I hope not.

Reference:

Henrich, J., Heine, S. J., & Norenzayan, A. (2010). The weirdest people in the world? Behavioral and Brain Sciences, 1-75.

A week in March

Sunday was Mother’s Day. I woke up in my mother-in-law’s house with a horrendous cold and conjunctivitis, my left eye swollen and weeping. My daughter was glued to the enormous television in the lounge (a rare treat for her) and I could hear my usually patient husband, now weary with ill wife, elderly mother and active 3-year-old, imploring the latter to come a wish me a Happy Mother’s Day. NO! was the resounding response. My mother-in-law admired the bouquet of flowers resting in water in the kitchen. ‘They’re for Courtenay’ my husband said. She came in to thank me for them. Not the restful start to the week I had in mind.

By Monday lunch time my eye had recovered enough to let me get on with some work. The main challenge for the SCALES project at the moment is to recruit as many schools as possible to take part in the screening phase. Ideally all 300-odd schools would say yes, but that is unlikely to happen. Realistically, we are aiming for 80% of all schools. In reality, just over 40% have agreed so far. This is over 5,000 children, and we’ve still got time, but recruitment is starting to worry me. Only 3 schools have said no, many just haven’t responded. I understand this – schools are busy places and my research project just isn’t so high on the list of priorities. But for a population sample, we need them. So I spend a fair bit of time drafting more emails, outlining what is involved and what we can offer in return. I also work on updating the database, redrafting the advertisement for the graduate research assistant and phoning various schools that have requested further information. When that is done I deal with other admin –scheduling student meetings, booking travel for the week ahead, submitting a paper revision, and writing three references for current and former students.

Tuesday I leave very early to make a 9am meeting at RHUL. I see my MSc student first – she too is having trouble with recruitment and we are discussing the options, plus possible changes to the experiment following pilot testing. I then have end of term meetings with undergraduate personal advisor students. I think this is what GPs must feel like – 10 minute slots to see how people are doing, with the serious issues raised about two minutes before the next person is due to arrive. I’m always behind schedule but today I need to leave promptly as I have a ferry to catch.

I’m visiting a special school on the Isle of Wight and arrive at the end of the school day. I’m here to collect data for an ESRC funded project we’re running that is using eye-tracking to explore language production in children with language disorders and/or children with autism spectrum disorders (ASD). I’m also here to celebrate with two of the speech-language therapists – we’ve just submitted a paper together! I have an hour or two to meet with my PhD student and the post-doc working on the project. Then we go to dinner to meet the therapists. When I came to RHUL, I set up the LiLaC (Literacy, Language and Communication) network, with the express aim of getting researchers and clinicians together to foster collaboration and make research less mysterious to the people most likely to use it. These therapists were the first to take up the LiLaC challenge – they wanted to evaluate a therapy programme they offered to teenagers with severe language and communication disorders and we helped them to do this. They are very excited about the submission and I feel a bit of a killjoy as I try to manage expectations. After all, they have never experienced the joys of peer review and I don’t want them to be too bruised by the experience. By the way, those of you dealing with REF and impact (see Dorothy Bishop’s excellent comments on this) may be interested to know that despite the fact that this collaboration has clearly changed working practice, encouraged publication of a manual that will be used by other therapy teams, and has direct implications for employability of young people with communication disorders, this does not meet the REF definition of impact – extremely annoying!

Anyway, on Wednesday I finally get to see the kids. I don’t really have time to do lots of testing anymore, but I do love it and make time whenever I can. It really keeps me grounded; the kids in this school are at the severe end of the spectrum and a day with them is very humbling. Of the vast number of research papers published on ASD, I wonder how many have any relevance to the lives of these people. For example, a study is published this week suggesting that people with autism have ‘an information processing advantage’. I haven’t read the paper in detail and unlike the participants of that study, we are investigating children with a wide range of abilities, but I just don’t see the advantages of being able to name all the racetracks in Europe, of bringing Mr Men into every conversational exchange, of asking each new person met for their list of personal dislikes, or being able to notice and then label every tiny detail on the screen when asked for a simple picture description. I am equally intrigued by the difficulties faced by the non-autistic children with language impairment. We met a bright boy of almost 14 who was unable to name any letters of the alphabet, despite extensive intervention – what is the limitation? None of our current theories seems to capture the complicated picture of strength and difficulty we are presented with.

We leave the island on Thursday afternoon. I haven’t slept much as I’m still coughing and still puzzling over the assessments we’ve done and how we’ll make sense of the data we’re gathering. It has been good to spend some time with the team – the PhD student took the opportunity to outline her analysis and writing plans for the next 6 months; the post-doc is coming to the end of his contract and is applying for a first lectureship in the most brutal academic climate. We get back to RHUL in time to drop off the testing kit and I neglect running club to race home and collect my daughter from nursery.

Friday sees me in a mainstream primary school, not for assessment, but because BBC London want to do a piece on the SCALES project and are filming us in Cranmere School. Jo Slessor is the wonderful Special Educational Needs Co-ordinator there and one of the first to sign up to the project. She has kindly agreed to speak on camera about the educational implications of language difficulties and has even persuaded a very articulate and thoughtful mum to come in with her son. A few years ago I did a Media Fellowship with the British Science Association, hoping that this would put me more at ease when speaking to the press. I spent a splendid few weeks in Dublin writing for the Irish Times, phoning scientists and chatting to them about work in progress. Unfortunately we rarely hear about work in-progress in the mainstream British press, instead we just get the headline news when results are finally published. That is why I’m so pleased the journalist from the BBC has taken an interest in our story. It takes a very long time to get the footage they need and the school staff and children are incredibly patient. I’m impressed with the journalist and how she has listened to what I said I wanted to emphasize when we spoke about it last week. Everyone is nervous, but they do a brilliant job and I am optimistic that it will be a good piece that raises awareness of language impairment (you may be able to see for yourselves – it should go out on Monday, 26 March at 6.30pm).

After filming I go back to RHUL to meet with the post-doc who is my right-hand woman on the SCALES project. We review all the hard work she’s done while I’ve been away and she adds to my long list of things to do. I realise that I will have to negotiate a few hours with my husband on Sunday to get it all done, but she has definitely lightened the load.

As I drive home exhausted on Friday, I think about all the different roles I have assumed in the week: teacher, mentor, clinician, public speaker, administrator, wife and mother. Sometimes, especially weeks like this when I’m run down and not feeling my best, I think it is all too much. It’s an impossible job with too many different strands to manage at all well. But then I reflect that this variety is actually one of the things I love most about my job. Every day is different and every day brings me into contact with fascinating people leading challenging but fascinating lives. I am never bored – my brain is always ringing with questions and ideas and this helps me to keep going when it is a bit overwhelming. And so now I look at the coming week and see that it is just as manic, but just as interesting. My cold has pretty much gone and yesterday my husband and daughter took me for afternoon tea on the rooftop terrace of the Ashmolean to celebrate Mother’s Day. Things are looking up.

A lesson in persistence

Academic life can be brutal at times. I became an academic because there were questions that I wanted to answer about why some children fail to learn their native language as expected. The only way to pursue this research question is to convince another group of academics that my ideas are valuable and worth funding. This involves writing a grant – a proposal that details how I will answer the question, why it is important, what methods and materials will be used, how many research staff will be required, how the findings will be communicated and what the impact of those findings will be. Anyone who has ever written a grant will know that grants represent a tremendous amount of work and a huge personal investment.

The seeds of the SCALES grant were sown way back in 2007. Gillian Baird and I were attending the 4th International Afasic Symposium and spent a pleasant evening discussing Bruce Tomblin’s talk and the epiSLI study (more about that later). We discussed the possibility of a UK population study of risk for language impairment, one that would take co-morbidity into account from the earliest stages and one that measured the impact of language impairment on the child’s everyday life. Conclusion: let’s write a grant…

We got a fantastic team together (more about them later!) but the first hurdle we faced was that a population study would require screening a large number of children in order to identify our target sample and none of the available screening measures were really up to scratch. So we decided to write a preliminary grant that would test two screening  methods, direct child assessment or teacher report of everyday language and communication. In testing the screen, we would also assess how many identified children had ‘specific’ language impairments and how many had additional developmental concerns.  It seemed a very straightforward proposal: theoretically interesting, clear hypothesis, clear implications for policy and practice.

The rejection letter and five sets of reviewer comments of varying degrees of venom and hostility arrived four days after the birth of my first baby. (Some of you may be wondering why on earth I checked my email four days after giving birth – I can only claim post-partum denial of reality).  Now every academic has experienced grant rejection and I suspect most find it quite upsetting. But in my hormonal, sleep-deprived state I was completely inconsolable. Convinced that my research career, indeed my life as I’d known it was over, I resolved to spend the rest of my days trying to feed my screaming baby. I sent my co-applicants another email. It went something like ‘our brilliant grant has been completely rubbished. Oh, and I’ve had a beautiful baby girl.’ Fortunately they are a wise and wonderful team and helped me to put things in perspective!

I put it behind me, wrote a different grant (that got funded), adjusted to parenthood and went back to work. About a year later we reconvened and decided to go with what we believed was the best available screening measure and write the grant we really wanted to do. Now, we knew that ideally we would follow children over time, but longitudinal projects are very expensive to run and don’t fit into the standard 3-year grant scheme. I was also a relatively new and untested investigator, so it was unlikely that anyone would trust me with such a large project. So we played it conservatively –screen at reception, assess in Year 1 and investigate language deficit and co-occurring difficulties.

This time I was more mentally prepared for the rejection letter and was somewhat cheered by the fact that the five reviewers were for the most part extremely positive. But my good cheer soon gave way to deep frustration – unlike other countries, here there is usually no option to revise and resubmit a grant. It now looked like our project would fester in the filing cabinet.

I don’t give up easily though – this was a project that I really believed in, we had terrific support in Surrey and it just had to happen. So I phoned Ailish Murray at the Wellcome Trust and I asked for her advice about what to do next. She was fantastic- she told me that the panel had been enthusiastic about the project but felt that a longitudinal design would be best suited to answer our primary research questions. Although they would not take a resubmission, we could submit a new, 4-year grant with different questions and a different method.

One more chance. As luck would have it, our last chance coincided with the last ever round of Wellcome project grants. Half of England would be putting a grant in to this round. I found myself in a big grant-writing slump – it seemed a completely hopeless endeavour and a total waste of time. I’m also not great at endlessly revising and rewriting things, but my very thoughtful and experienced collaborators sent back draft after draft with comments and questions and pushed me to keep going.

A particularly challenging aspect of this process is that we all know when the panel meets, so there is a period of time in which a hand full of people know your fate, but you are not one of those people. This purgatory was longer than usual this time, given the large number of applications received. At the very same time, my husband was waiting to hear about a grant submitted to a different funding body. We looked at the month ahead and realised we’d either be drowning in gin or swimming in champagne. We tried not to dwell on the other possibility that one of us would get funded while the other would be disappointed (again).

My husband heard first – good news! I was thrilled for him, but figured that was the death knell for my grant. (I know the two events are causally unrelated, but it didn’t seem possible that we’d both get funded). I stopped holding my breath every time I opened my email. Then one day I was on a bus in London, looked at my phone, and saw an email from Ailish Murray followed by messages from every one of the co-applicants. I didn’t want to cry on the bus, so for a split second thought I might wait until I got home to open them. Of course I didn’t do that. I must have shouted at an inappropriate bus volume because the woman next to me said ‘is everything alright?’ And it was! We did have lots of champagne and I was elated for weeks. Then I read the grant again and realised I would now have to do all the things I said I was going to do…

Surrey Communication and Language in Education Study (SCALES): an introduction

Many years ago I had the amazing good fortune to work as a research assistant for Dorothy Bishop. My job was to drive the length and breadth of Britain assessing six-year-old twins, many of whom had language impairment. I was a speech-language therapist at the time, so I knew a fair bit about assessing young children with language and communication difficulties. But I knew nothing about research and even less about the reality of gathering the amount of data necessary to explore the genetic and environmental contributions to language impairment. I was, however, up for a new challenge and keen to work with Dorothy and to travel around this fair island in the name of scientific discovery.

It was an amazing experience. Certainly there were times when it was monotonous and I never wanted to see another child or motorway again. As I look back though, I just remember how much fun I had and how much I learned. My only regret is that I never wrote any of it down. Most of the time I was just too busy entering data or figuring out how to get to my next destination (in the days before SatNav) to keep a journal. Yet just about every day brought an experience that I wanted to share with someone else.

A great example was my first home visit – a story I tell to all new students and research assistants in my lab. I went to see twin boys, one of whom had been expelled from school for his behaviour (at the age of six remember). When I arrived, mum explained that he had been diagnosed with dyspraxia and was often unintelligible. He was also not to keen on my visit. In fact, he was under his bed and no amount of temptation with stickers and Pokemon cards could entice him to come out. In desperation, I suggested to mum that I would just carry on setting up my equipment and see if he might become interested in me. When I got to the bottom of the stairs he appeared, hurling shoes and toilet rolls at me and shouting with great clarity “fucking off, you fucking idiot.” His poor mum pleaded with him to stop swearing while I dodged missiles and questioned the wisdom of my career change. Happily though, once his brother started my activities, he became very interested in what we were doing and eager to demonstrate that he could do it too. He tried extremely hard and we managed to complete the session successfully.

Fortunately not every home visit was like that, but I did face many quirky challenges such as chickens in the kitchen, finding the small difference that distinguished identical twins, engaging the child who just wanted to bite my ankles and recognising the signs that the loo is required by an over excited child who does not want to be parted from the dinosaur game. And those were the participant challenges – I also had to endure a number of colourful accommodations and over time perfected the art of dining alone. In total, I personally saw about 200 twin pairs and travelled as far north as Newcastle and as far south as the Cornish border. That’s more than 1,000 hours of testing and many thousands of driving miles (I’ve probably been in more motorway service stations than Alan Partridge). Thanks to Dorothy’s brilliance, we published numerous journal articles and made exciting new discoveries, though I often feel that the publications just don’t do justice to the stories behind the numbers.

So now I find myself the Principal Investigator on SCALES, a large project funded by the Wellcome Trust. SCALES will be the first epidemiological study of risk for language impairment at school entry in the UK. It will involve screening a population cohort, in-depth assessment of approximately 500 children and a longitudinal follow-up of those children over a four year period. It involves a large research team and extensive collaboration with Surrey County Council, local schools and families. My life circumstances have changed since the twin days – I’m a lecturer in Psychology and have a 3-year-old at home, so there are many more demands on my time. But I am keen not to make the same mistake twice and allow my challenges and experiences to go unrecorded. SCALES is the perfect opportunity to record what actually goes in to making projects like this succeed and to highlight the personal stories that make science work. I hope the blog will be fun and informative, documenting both the drudgery and exuberance of a life in science.